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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
208 questions
I Noticed Everyone With SMA Is Pretty. Pretty Lives Matter Most
A mySMAteam Member asked a question 💭

65yo male smaiii

A mySMAteam Member

Inside and out!❤️

posted February 6
When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
A mySMAteam Member asked a question 💭
How Do You Cope With Seasonal Changes And SMA?
A mySMAteam Member asked a question 💭
A mySMAteam Member

For myself as soon as it gets below 65, I’m cold. I am from upstate New York so 7 months out of the year I’m generally cold. Most of the time I’m freezing you would say. So are use hand warmers… read more

posted November 11, 2023
Dating Delema
A mySMAteam Member asked a question 💭

How do you handle telling someone that you can't take them to where they want to go on a date because the place they want to go is not really wheelchair accessible..even though the website says it is?

So, the lovely person I have been dating really wants me to take her out to a Halloween theme park for her birthday. Asside from the billion of complications of trying to arrange a ride there, pick her up, arrange for my attendant to put me to bed at night and the steep cost of tickets more than… read more

A mySMAteam Member

There are actually quite a few more accessible places than people realize,,,I know I didn't until I started dating my husband. There's even accessible water parks,,,100% accessible. Just go for… read more

posted January 18
How Can I Loose Weight?
A mySMAteam Member asked a question 💭

I have SMA type 3 and I feel like i’ve gain some weight and don’t know how to loose it. I heard Fasting can just make things worse.

A mySMAteam Member

Limit your portions. No one should eat until their stuff. And do lite exercises.

posted October 21, 2023
Any Parents Of Kids Who Have Received The Zoolgensma Treatment?
A mySMAteam Member asked a question 💭
Hi , Is There A More Info On The New Drug Development Called Apitegromab – Scholar Rock? I Understood This Drug Is In Phase 3 . Thank You
A mySMAteam Member asked a question 💭
A mySMAteam Member

I want to lose weight, SMA type 2

posted October 10, 2023
Any Tips To Make A Toilet Seat More Comfortable?
A mySMAteam Member asked a question 💭

We use a stand-alone toilet and Hoyer Lift to get my adult son onto it. Long sitting time takes a lot of energy,

A mySMAteam Member

Thanks Fred! Will hunt down some plastic options to try.

posted October 26, 2023
What Is The Average Life Expectancy For People Who Have Sma Type 2?
A mySMAteam Member asked a question 💭
A mySMAteam Member

My first neurosurgeon told me an average adult would be around 47 but that was depending on different factors

posted October 3, 2023
What SMA Symptom Do You Have That You Didn’t Expect?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Please understand I'm not bitter, just frustrated. Truth be told, I'm grateful that God has been very good to me. I am now 72 years old. Doctors told my mom I be lucky to be 12 or 14.😁😁😁😁😁

posted October 31, 2023